Sunday, February 19, 2012

Doctors Doctors and more Doctors!!

Having Multiple Sclerosis is hard enough, but trying to manage this disease without a good team of doctors is a nightmare. In 3 years I have been battling this disease, I have met almost every specialist in this city, and this is NOT a small town. I have had my share of bad doctors and I have heard horror stories from others about their own doctors.

What I have discovered is this: YOU are your best advocate, and the doctors work for you, you should not feel insignificant and your doctor should not try to tell you what you are feeling. No one knows what is going in inside of your body other than you. Your doctors are here to help you manage your symptoms. If they cannot do so, or they try to tell you that your symptoms simply cannot be what you describe, then it is time to find a new doctor.

This was a lesson learned the hard way for me. I was completely dumbfounded when I was hit with the MS diagnosis. It was not something I expected, I was not prepared for it and I honestly knew very little about this disease when I was diagnosed. My neuro who diagnosed me assured me that this disease was treatable, and manageable. Every new symptom that popped up during those first few months were dismissed and I was told it was all a result of stress and I needed to relax. While I do agree that stress does indeed have a physical impact on those with MS I also felt belittled and ignored.

During my first round of IVSM, I had gained 11 pounds in 2 days and was so sick I wanted to die. He told me this too was a normal result of the IVSM. When I went into withdrawal after my 5 day round, I was told this too is normal. A few months later when I started having Optic Neuritis (ON) issues, he brought me in for EP testing and confirmed that I had ON. He then ordered a round of oral steroids which did nothing to stop the ON. At my follow up he says, and I quote "I'm sorry the steroids didn't work, nothing else we can do at this point. Come back to see me in 3 months". THREE MONTHS?? Seriously, I cannot see out of my left eye and you tell me to come back in 3 months?

It was at this point that I began to lose feeling in my hand, I could not control my balance, I could not feel my feet and I still couldn't see out of my left eye. I decided it was time for a second opinion. I made an appointment with a new neurologist who ordered a full set of MRIs, another round of IVSM, and started me on Copaxone. She listened to my symptoms, prescribed medications to treat the symptoms, and scheduled a follow up appointment 2 weeks later to check my progress. I have been seeing her ever since. I have failed on Copaxone, I was allergic to Avonex, and I have now been on Tysabri for a little over 2 years. I have had over 32 MRIs in 3 years and I know that my doctor stays on top of the progression of this disease and how it effects me. If I have a question, or I need something taken care of, I know that I will get a call back that same day and if I need to come in, they will do what they can to fit me in. This is how your doctors should treat you.

My primary care doctor has been the best person I have ever had on my team. He keeps track of all of my other doctors, he keeps track of all of my medications and he keeps in close contact with my neurologist. If he does not know the answer to my questions, he admits it and then researches until he has an answer. He was detrimental in my disability case and treats his patients with respect. He is the reason I was able to meet so many specialists. He has had me tested for everything he can think of to see if there are underlying causes to my symptoms that may not be related to MS instead of trying to dismiss each and every symptom into the "well, you have MS" category as so many other doctors tend to do.

On top of MS, I fell and fractured 2 vertebrae in my spine. I made the mistake of going to a local ortho, who had a sterling reputation. Unfortunately this was the biggest mistake I have ever made and I will live with that decision for the rest of my life. Instead of passing me on to someone who knew what they were doing, he prescribed physical therapy. I followed the doctors orders for 6 weeks even though the pain continued to get worse. I continued following up with the doctor and told him each time that the pain was getting worse. After 6 weeks, I ended up asking my neuro to order another set of MRIs because the ortho failed to do so and could not find anything on the XRays to explain the increased pain. The result of the MRI was that I now had 4 broken vertebrae. Going to physical therapy caused another 2 fractures. At this point the doctor proceeds to tell me there is nothing he can do about it and that I should continue with physical therapy. I found a new doctor at this point. Unfortunately, due to the new fractures and the time elapsed from the original injury, I was no longer a candidate for surgery. The fractures developed Schmorle's Nodes. Essentially, it means I have 4 herniated discs between the fractures that had herniated on the inside against my spinal cord and there is nothing we can do about it except for prescribing narcotic pain medications and I get to live with this pain for the rest of my life.

This is why any time I have any injury I now consult a minimum of two doctors. A second opinion is invaluable even if you insurance does not want to cover it. I am not saying you should not trust your doctors, but if you have any doubt that your doctor may not be the best person for the job, then it is time to get a new doctor.